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Monday, August 26, 2013

My Visible Invisible Illness

Oftentimes, when people find out
that I’m chronically ill I get asked the question “Would I rather have a
visible or invisible iillness?” It’s such a hard question because there are “advantages”
and “disadvantages” of each. Plus, I’ve never been on both sides of the coin
before. How was I supposed to know if I would prefer having a visible illness if I didn’t know what it was like?

Well, now I kind of know. I have
what I’m calling a visible invisible illness. How can I have a visible
invisible illness you may ask? Easy. Sometimes my illness is visible and
sometimes it’s not.

I have several different chronic
illnesses and until about 3 weeks ago they were all invisible, until I was
passed out on the floor (thanks Dysautonomia). It’s always been so frustrating
to explain to people how I could look like a perfectly healthy 20 something female
and yet be so sick at the same time. On the outside I’m the picture of health.
On the inside my body is at war with itself 24/7 and no one can see that part
or understand it but me.

But then, things started becoming
more visible in my invisible illness world. I started using a wheelchair
recently; especially when I’m at school to help with the extra weight of my
book bag to prevent me from passing out as much. I don’t make it past 10 minutes
standing any longer and that’s on a really good day. I also use it to
counteract the pain from my Fibromyalgia and EDS. Let me tell ya what though,
having a visible illness is very different than having an invisible illness.
You are more noticeable. People start offering to do things for you that you
can do yourself even in your wheelchair, but they feel sorry for you.

So now those visible invisible
illnesses I was talking about. How does it feel to be someone with a visible
invisible illness? Weird. That’s how. I use my wheelchair to get into school
and class because I have my book bag. Then I walk to the bathroom. I see the
same people both times and so I need to explain that I just need to use it for
certain things because I have a condition that causes me to pass out sometimes.
And they just stare. And it’s awkward. So I turn around and scurry back to
class.

I also feel like I have to explain
why some days I do not have to use a handicap parking space and some days I do.
Some days my pain is less and some days it’s pretty high, but you can’t see it
either way. Also lately my tiredness and fatigue is showing up on my face. I
have had multiple people tell me the past two weeks that I look tired it is
unreal. While part of me is excited that I’m finally starting to look as sick
as I feel, I’m not excited that so many people are noticing the part that does
not flatter me.

Anyway you cut it, having any type
of illness visible or invisible is a journey every day. Either provides perspective
for being grateful for the small things. But I think that being able to live in
the realm of having a visible invisible illness gives you the best perspective.
You know both sides of the story, how to accept anyone for themselves their uniqueness.
Therefore, having a visible invisible illness seems like an amazing thing to
me, so if that’s you, embrace yourself, because you are awesome!

About Me

I am a young adult woman, who thought I had it all together, then realized I didn't. Which, I am fairly certain happens to all of us. However, it happened to me all very fast and in all aspects of my life. I lost my health, my job, and basically my whole life as I know it all within the span of a month. I am putting my life back together one piece at a time and hope to do it with peace. Hope you enjoy as I seek to keep my identity in Christ while putting my life back together into what He wants me to be! :)